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Thyroid UK
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I’m sick of Endocrinologist!

I’m fighting with an endo over needing more than 10mcg of cytomel with my levo. She thinks everyone should be fine on 10mcg of t3 and anymore is harmful. Is there any research or studies that proves different because I’m sick and tired of fighting about this!

96 Replies
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What's happened? Your previous post 2 months ago says that you are taking 15mcg T3 with your Levo.

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Yes, that was my other endo unfortunately she’s out on leave. This fill in one is terrible and only wants to now give me 10.

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Surely your test results speak for themselves? Has your FT3 lowered with the lower dose of T3?

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Have not tested it on lower dose because I can’t function on 10.

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My FT4 is below midrange and feel unmotivated so I also tried telling her I need more t4 as well and she thinks I have mental issues because In her opinion I should be fine.

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You need to find a new doctor, she is supposed to work for you.

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Hi bitedust

I wrote this letter for patients whose doctor wanted to reduce their T4. Please amend it to suit your own situation

Your Address here

no_reply@example.com

Date:

Dr’s name here

Surgery address here

Post code here

Dear Dr *********

Unilateral Reduction of my dose of litheyronine (T3)

Mental Capacity Act 2005

Good Medical Practice 2013

Good Medical Practice Consent: patients and doctors making decisions together 2008

Montgomery v Lanarkshire Health Board 2015

Bolitho v City and Hackney Health Authority 1993

I write following my appointment with you on ??/??/???? regarding your wish to reduce my ???mcg dose of T3.

During the appointment I told you that I did not want to reduce my dose of T3 because I feel good on this dose. I feel well, I can do my job to the best of my ability and I can contribute properly to my family life. I am not as irritable or fatigued. I can think clearer. I told you that my signs and symptoms return on a lower dose. You said that you wanted to reduce my dose because my Thyroid Stimulating Hormone (TSH) was too low and thereby there is of a risk of Osteoporosis (OP) and Atrial Fibrillation (AF). I showed/told you about research that shows that this not the case. (See appendix 1 attached.) I told you that you have no logical justification to reduce my dose of T3.

You did not carry out or refer me for an Electrocardiogram (ECG) test to establish a baseline or detect any abnormalities in my heart’s electrical activity despite your concerns about AF.

You did not refer me for a DEXA scan to establish a baseline or detect any abnormalities in my bone mineral density despite your concerns about OP.

You then reduced my dose of T3 to ??mcg.

Good Medical Practice

I am sorry to say that because you simply went ahead and reduced my dose against my wishes you did not comply with the preamble of the General Medical Council’s Guidance for Doctors Good Medical Practice 2013:

“The duties of a doctor registered with the General Medical Council”:

“Work in partnership with patients. Listen to, and respond to, their concerns and preferences. Give patients the information they want or need in a way they can understand. Respect patients’ right to reach decisions with you about their treatment and care.”

Mental Capacity Act 2005

During the appointment you did not assess me to determine if lacked Mental Capacity as laid out in section 3 of the Mental Capacity Act 2005. Therefore I am consider that you have assumed that I have mental capacity in accordance with section 1(2) of the Act.

Consent: patients and doctors making decisions together/Montgomery v Lanarkshire Health Board 2015

As I have, and you have assumed that I have, mental capacity to make decisions about my health, I am sorry to say that you did not follow the model in the General Medical Council’s Code of Practice Good Medical Practice Consent: patients and doctors making decisions together. This is important because the medical negligence case of Montgomery v Lanarkshire Health Board 2015 stated at paragraph 93 that following the model at paragraph 5 of Consent: patients and doctors making decisions together is a legal obligation.

The Guidance at paragraph 5 of Consent… states

If patients have capacity to make decisions for themselves, a basic model applies:

The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.

The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.

The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.2

If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.

With regard to part A

I told you about my condition and that it is my experience that on a reduced dose of T3, my signs and symptoms will return.

You did not assess me for signs of over treatment or refer to my blood tests for T4 and or T3 for to see if they were over their reference ranges.

I showed/told you that there is research that shows that low TSH does not cause OP.

I showed/told you that there is research that shows that OP and AF more likely when T4 and T3 are too low or too high.

I told you that I do not have signs or symptoms of hyperthyroidism such as palpitations, tremor, or sweating.

I told you that I get some of my information from the internet and patient support groups. Their Lordships and Ladyship in the Supreme Court in Montgomery v Lanarkshire Health Board 2015 said at paragraph 76 of the judgement:

“it has become far easier, and far more common, for members of the public to obtain information about symptoms, investigations, treatment options, risks and side-effects via such media as the internet (where, although the information available is of variable quality, reliable sources of information can readily be found) (and) patient support groups…It would therefore be a mistake to view patients as uninformed, incapable of understanding medical matters, or wholly dependent upon a flow of information from doctors.

The idea that patients were medically uninformed and incapable of understanding medical matters was always a questionable generalisation, as Lord Diplock implicitly acknowledged by making an exception for highly educated men of experience. To make it the default assumption on which the law is to be based is now manifestly untenable”.

I told you that you had no logical justification to reduce my dose of T3.

With regard to part B

You simply said that there is a risk of OP and AF due to low TSH. It has been shown that the risks of OP or AF is due to either too much or too little for the individual patient’s T3 and T4

You did not quantify the risk of OP or AF in a way I could understand or at all. Therefore you have no adequately explained the options to me and the possible risks or benefits of staying on my dose, raising my dose, or reducing my dose.

By not quantifying the risks of the above options to me personally, you have not given me the opportunity to weigh the risks and benefits of each option as required in part C of the GMC’s model.

You did put pressure in me to accept your decision by simply saying that you are reducing my dose.

With regard to part C

I have the mental capacity to make decisions about my health. I have read the research referred to above. I understand that the risk of OP and AF is from having too much or too little T3 for me as an individual. I don’t have the signs or symptoms of too much T3 and/or T4. My blood tests show I am not outside the reference range for T3 and/or T4. I have weighed up the theoretical and mostly unfounded risks of staying on my dose against the actual risks of lowering my dose. I have also considered the non clinical factors of lowering or remaining on my dose, such as the impact on my family life and work life if my signs and symptoms recur, as they will do if my dose is reduced.

I have assessed the risks of OP and AF by lowering my dose to be much higher than remaining on my dose.

I have decided to remain on the dose I am on.

With regard to part D

Remaining on my dose is clearly of overall benefit to me. I feel well, I can do my job to the best of my ability and I can contribute properly to my family life. I am not as irritable or fatigued. I can think clearer. Reducing my dose will result in harm to my health by the return of my signs and symptoms. It will also negatively impact on my work, private and family life. Further, as described above, there is no reliable evidence that low TSH actually causes OP or AF.

If you are still of the opinion that you want to reduce my dose to ??mcg, please explain how remaining on my current dose would not be of overall benefit to me in writing. It is important that you quantify the risk of OP or AF to me as an individual in your written explanation. Good Medical Practice at paragraph 47 says that you must treat me an an individual. Please be aware that there is another body of responsible medical opinion that agrees with maintaining a dose of thyroid medication that suppresses TSH without causing thyrotoxicosis and had been recognised as such by the General Medical Council.

Lack of logic to reduce dose of T3

I am unaware of any guidance to unilaterally reduce a patients dose of T3. Such guidance does not appear in the British Thyroid Association’s statement on the management of primary hypothyroidism. Recommendation 7 states:

“Although fine tuning of serum TSH levels within the reference range may be indicated for individual patients, deliberate serum TSH suppression with high dose thyroid hormone replacement therapy (serum TSH <01 mU/L) should be avoided where possible as this carries a risk of adverse effects such as cardiac rhythm disorders including atrial fibrillation, strokes, osteoporosis and fracture (1/++0). As an exception, patients with a history of thyroid cancer may require deliberate suppression of serum TSH if there is a significant risk of recurrence”.

It does not recommend that ALL patients on thyroid hormone replacement therapy unilaterally have their dose reduced. It states “where possible”.

This recommendation is now out of date following research that low TSH is not a factor in OP or AF but excess or low T3 and/or T4 is. To blindly follow this out of date statement is in conflict with a doctors legal obligation to follow the model consultation in Good Medical Practice Consent: Patients and doctors making decisions together.

The Royal College of General Practitioners Curriculum states at 3.17 that a GP should:

“Recognise your central role as a primary care physician in managing diabetes mellitus and hypothyroidism”,

and

“Recognise the potential for abuse of thyroxine and propose strategies to reduce dosage”.

I can assure you that simply being on a dose that makes me well is not abusing thyroxine especially if my blood tests for T3 and T4 are within their reference ranges. Any strategy to reduce dosage must be logical. This is confirmed by the medical negligence case of Bolitho v City and Hackney Health Authority 1993 which states that a doctor’s actions must be logical even if it is supported by a responsible body of medical opinion. For the reasons above, I do not believe that your action to reduce my dose without any evidence or following the BTA statement contrary to my well evidenced and argued wishes to remain on my dose of T3/T4 is logical.

If you have concerns about me suffering from AF or OP please refer me to a cardiologist for an ECG test and an Orthopaedic specialist for a DEXA scan.

I hope you reconsider your decision to reduce my dose of T3 and/or T4 and restore it to the level that makes me feel well and contribute to my work and family life. I value my actual health more that an unfounded and unquantified potential risk in the future so much that if my dose is not maintained or restored, I will take this matter further by way of complaint to the Clinical Commissioning Group, the General Medical Council or by a claim for negligence.

Yours Sincerely

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Appendix 1

Thyroid Stimulating Hormone and Bone Mineral Density:

Journal of Bone and Mineral Research, Vol. 33, No. 7, July 2018, pp 1318–1325

DOI: 10.1002/jbmr.3426Evidence From a Two-Sample Mendelian Randomization Study and a Candidate Gene Association Study

Nicolien A van Vliet,1 Raymond Noordam,1 Jan B van Klinken,2 Rudi GJ Westendorp,1,3

JH Duncan Bassett,4 Graham R Williams,4 and Diana van Heemst1

1Department of Internal Medicine, Section of Gerontology and Geriatrics, Leiden University Medical Center, Leiden, the Netherlands

2Department of Human Genetics, Leiden University Medical Center, Leiden, the Netherlands

3Department of Public Health and Center for Healthy Aging, University of Copenhagen, Copenhagen, Denmark

4Molecular Endocrinology Laboratory, Department of Medicine, Imperial College London, London, UK

ABSTRACT

With population aging, prevalence of low bone mineral density (BMD) and associated fracture risk are increased. To determine whether low circulating thyroid stimulating hormone (TSH) levels within the normal range are causally related to BMD, we conducted a two-sample Mendelian randomization (MR) study. Furthermore, we tested whether common genetic variants in the TSH receptor (TSHR) gene and genetic variants influencing expression of TSHR (expression quantitative trait loci [eQTLs]) are associated with BMD. For both analyses, we used summary-level data of genomewide association studies (GWASs) investigating BMD of the femoral neck (n.32,735) and the lumbar spine (n.28,498) in cohorts of European ancestry from the Genetic Factors of Osteoporosis (GEFOS) Consortium. For the MR study, we selected 20 genetic variants that were previously identified for circulating TSH levels in a GWAS meta-analysis (n.26,420). All independent genetic instruments for TSH were combined in analyses for both femoral neck and lumbar spine BMD. In these studies, we found no evidence that a genetically determined 1–standard deviation (SD) decrease in circulating TSH concentration was associated with femoral neck BMD (0.003 SD decrease in BMD per SD decrease of TSH; 95% CI, –0.053 to 0.048; p.0.92) or lumbar spine BMD (0.010 SD decrease in BMD per SD decrease of TSH; 95% CI, 0.069 to 0.049; p.0.73). A total of 706 common genetic variants have been mapped to the TSHR locus and expression loci for TSHR. However, none of these genetic variants were associated with BMD at the femoral neck or lumbar spine. In conclusion, we found no evidence for a causal effect of circulating TSH on BMD, nor did we find any association between genetic variation at the TSHR locus or expression thereof and BMD. © 2018 The Authors. Journal of Bone and Mineral Research Published by Wiley Periodicals, Inc.

Appendix 2

Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy

Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, and Graham P. Leese

Ninewells Hospital and Medical School (R.W.F., R.T.J., T.M.M., A.D.M., G.P.L.), University of Dundee, Dundee DD1 9SY, United Kingdom; and School of Accounting, Economics and Statistics (S.R.B.), Edinburgh Napier University, Edinburgh EH14 1DJ, United Kingdom

Context: For patients on T3 replacement, the dose is guided by serum TSH concentrations, but some

patients request higher doses due to adverse symptoms.

Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T3 replacement.

Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.

Setting: A population-based study of all patients in Tayside, Scotland, was performed.

Patients: All patients taking T3 replacement therapy (n 17,684) were included.

Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (4.0 mU/liter).

Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10 –2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99 –1.123), 1.13 (0.88 –1.47), and 1.13 (0.92–1.39), respectively].

Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T3 to have a low but not suppressed serum TSH concentration. (J Clin Endocrinol Metab 95: 186–193, 2010)

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Great letter !!!!!! And SO much thought went into that !

... but ... how you gonna manage to tie the Endo .. down on a chair , gag her.... and put blinkers on her in order to make her read it !

She’s Not gonna do it !!

They see us as overreacting pains in the neck !...... and are glad to see us leave their surgery !

Luv Mx🌹

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if the Endo is worming in the NHS (which this particular one isnt) then they have a duty to read it The Endo has a duty to work in partnership with the patient. That's is part of Good Medical Pratice. If an NHS Endo refuses to read the letter or work in partnership with a patient, then is wher a formal complaint is made and the letter is used as evidence in that complaint. Good Medical Practice is there for a reason. It spells out to both doctor AND patient what the minimum standard for a doctor/ patient partnership is about. If the Endo doesn't meet that standard, then they are not being professional and can face censure by way of complaint to the CCG/Trust, the Parliamentary and Health Ombudsman, the Care Quality Commission and the General Medical Council. Not meeting the minimum standard can also be evidence of negligence. The threat of a negligence case can be enough to make an Endo (or other doctor sit up and take notice.

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My endocrinologist, in fact two of them from the same department, also refuse to consider or acknowledge information I presented to them both from research and from my own private testing. After many years of their oppressive bullying and lack of proper consideration of me as an individual I am now in full blown complaint mediated by the local clinical commissioning group. If there is no satisfactory resolution I will continue this through to the health service ombudsman. It is more than time that all of us who experience lack of individual care to the standards set out in holy shit balls letter et cetera are challenged and excluded and from common practice. My complaint has been levelled against both individual endocrinologist, my GP practice, the NHS advisory bodies such as the RMOC and N I CE in their recommendations for testing and treatment and my local NHS laboratory who continually refuses to test free T3 at the same time as TSH and free T4. The whole system is rotten to the core with the exception of a few enlightened clinicians. The basic standard of care for hypothyroidism needs radical and systematic overhaul and those of us that clearly know more than the professionals Who are supposed to be treating us seem to be the only way of creating these changes. The more of us that do this the less they will be able to divide and rule and oppress us.

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Ops! Typo alert! I meant to write that the inadequate care that those of us receive should be challenged and excluded not that we should be challenged and excluded!

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Sometimes I'm tempted to change my user name to typoqueen (Just kidding). I never really learned to type well on the computer. irina1975

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Good luck with your complaints. You're taking on a lot there. x

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Good for you for sticking with this and following through. A royal PIA for you and I think many docs hope we will get tired and drop our complaint at some point.

Some of us don't! Take care. irina

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Send copies along with an explanatory email from you to her boss, etc. Anyone over her head. Esp people in other departments. organizations that she can't have cronies sweep under the rug.

Complaints in writing esp usually get results. Sometimes it takes a while. Keep copies. There is always a way. Sometimes publicity sent to the right people.

Eve tually the mighty fall. Though not alwaysas fasr as we'd like. Or in time to help us. But Maybe someone else benefits because we took action. Worth it!!

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True, but I have a feeling that just don’t care and it wouldn’t make a difference. I’d rather spend my energy looking for someone who can work with me.

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Wow! I'm saving that in case I ever need it. So well researched. Thank you.

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Having read your superb letter, I am concerned that some of the reference to F3 should read F4......eg “ I can assure you that simply being on a dose that makes me well is not abusing thyroxine especially if my blood tests for T3 and T3 are within their reference range”. Am I reading this correctly.....I can only think autocorrect must have picked up T3 and assumed that is what you meant to write as it is showing T3 on all references where I believe you meant to write T4....if someone sends this to an already incompetent Endo they will not give the information the credit it deserves.......hope I am correct in bringing this to your attention.

Have a good day.....

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Wow. What a letter. Doing fine with my current new Endo but have bookmarked this for future use.

It seems even when we are doing fine medically things can turn on a dime.

Thank you. irina (US) but still applicable with a few changes. 🐱

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Wow, thanks! Only problem is I’m in the U.S.

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See my post above in the US too. Can still be a wonderful template for us.🐱 irina

And in the US we also have the 'L' and 'S' words" Lawyer and Sue!

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Tell her to take the advice of Professor Colin Dayan ...he is top of the tree and knows more about T3 than anyone ....your endo is stuck in a time warp that forgets we are all different

She would have apoplexy if she knew both my husband and daughter were tried on right up to 120mcg of T3 without the slightest sign of overactivity ...did not resolve their hypothyroid symptoms and pain either ,..wheras NDT does

10mcg is a tiny dose ...what matters is what your results for freet4 and freet3 are and how you feel

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120mcg of t3 and your alive, amazing! My endo would pass out if you told her that. They think anything over 10mcg will cause you osteoporosis and send you into a cardiac arrest.

No wonder many of us still have symptoms. Armour didn’t work out for me the t4 t3 combo suits me best. Just have to get it dialed in but with endos like her it’s almost impossible.

I agree t4 and t3 are the most important.

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Can't you just tell the endo to sit and spin, and buy your own T3?

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Also I have permanent a-fib. Since I have a pacemaker my TSH is safely WAY below 1. But I understand from my Electrophysiologist even without the pacer I could safely have a TSH around 1.0.

Besides if we didn't do what we could to feel well today we might not be around to develop possible side effects way down the road.

Her thinking makes no sense to me. All we have is the present.

As you are also in the US sounds to me like she's covering her ass legally at your expense.

You sound more polite than me. I would probably point this out to her.

Good luck and remember The squeaky wheel gets the grease. irina (Atlanta).

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Yes she’s worried I will harm myself with 20mcg of t3. That’s the max I take sometimes I need lower it depends on my activity level.

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Is there any other doctor in the practice you could ask to see while your regular doctor is on leave? It is your right. I've done that. You are the customer and she works for YOU.

Another leverage we have in the US is to call our insurance company, complain about substandard care and ask them to hold up her payment until it's settled. Then, if you don't want the face to face conflict send her an email or a message using your patient portal if she is connected to one.

40 years in the US healthcare system I do understand the infrastructure.

Feel free to PM me if you like. Please don't tolerate bad medical care.

irina

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Yes, there are other endos in the office I won’t be going back to her she clearly has terrible manners and is lacking in her listening to patients. I complained already once about her and yet she still acts the same way. She already ignored me once when I messaged her online she never responded back until I complained.

Then she writes notes about me saying patient refuses to listen and self medicates. Duh, because I’m not getting relief!

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Ask to see another doctor there soon so you can get your meds.

I wouldn't worry what she may have charted about you. My guess is the other partners have heard about her from other patients. Probably not her first trip to the rudeness rodeo.

Why don't you give the office a call today? Get the ball rolling and relieve your mind? Tell (don't ask) the person at the front desk that you are very frustrated at the care you received from her, you need your meds, and who might she think-among the doctors-might be able to solve your problem. And think about adding you hope it won't be necessary to go further. Using your own words you feel comfortable with.

You might suggest they fit you in next week asap as you are feeling worse by the day and really need your meds. Don't be put off by "we don't have an opening until....". This is an emergency for you.

I can hear how frustrated you are. irina

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PS bitedust. Forget her. Time to move on. Your goal is to receive timely and effective care quickly.

You can deal with letters of complaint to appropriate people later if you choose. irina

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I have moved on. Just sharing horrible experience. Never had an endo like that before.

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🐱

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I have a theory about US Endos. I believe most of the revenue comes from diabetic patients and at times the lower revenue-producing thyroid patients get shuffled to the side.

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Wouldn’t surprise me. My regular md even admitted it’s all about the money. They want higher volume of patients with very little time give. for quicker turnover. That’s not medicine! That’s fast food medicine.

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I got the meds I need I just won’t use her again.

My other complaint was my free t4 is a little below midrange and I’m still having symptoms. I can lower t3 and take the higher levo. If my t4 is below mid range I’m not well.

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good I'm glad you got your meds. Get your T4 raised if nec. But don't give up your T3's They are too hard won. It's always good to have a little stash.

I believe more of us self medicare as needed/ We have to deal with a @%$#^$& system.

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Yes, I like to store up extra t3 I’ve learned that lesson the hard way.

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Maybe she thinks T3 is an up and coming new street drug. Duh!

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This seems to contradict her beliefs:

DOSAGE AND ADMINISTRATION

The dosage of thyroid hormones is determined by the indication and must in every case be individualized according to patient response and laboratory findings.

Cytomel (liothyronine sodium) Tablets are intended for oral administration; once-a-day dosage is recommended. Although liothyronine sodium has a rapid cutoff, its metabolic effects persist for a few days following discontinuance.

Mild Hypothyroidism

Recommended starting dosage is 25 mcg daily. Daily dosage then may be increased by up to 25 mcg every 1 or 2 weeks. Usual maintenance dose is 25 to75 mcg daily.

rxlist.com/cytomel-drug.htm...

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I just re-read you info re Cytomel and would like to clarify.

My T3 is still being raised and I'm feeling better. I am now at 15mcg/day and will probably be raised to 20 (hopefully) on March 19th.

My main PA said I could take my entire dose early am (T3-15 and T4- 137) which worked well for me. But she went on maternity leave and another PA in the office suggested splitting my T3 into 2 doses. My early dose and a later afternoon one.

I've been doing this but as I don't stick to a strict 'same time every day' eating schedule fitting an afternoon dose in a timely way is difficult.

So I see from your post it's fine to take the T3 all at one time in the am. Am I correct? It's certainly much easier for me to take just one dose.

Thanks. irina

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I would switch to another Endo who is a Great Listener thinks out of the *Box* and

*Gets IT*.

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Me too. Those are the doctors I like to have. They are worth their weight in gold.

When I have to see a new doctor I try, if possible, to figureout if we will work well together, or if they see the world in black and white terms. If I can I try to move on before I really need them to go to bat for me.

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Hello my Fellow American . You are so right . We need an Endo who trusts/ respects us when we present to them symptoms and understands to dose us accordingly . BW is just a snapshot of the moment . Symptoms are cellular results and are very telling . Endoes ought to involve us with decision making in our behalf .

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You're right. I think we have more recourse here (US) as it is easier to vote with our feet and our pocketbooks. But we still have to fight to be treated properly at times. 🐱

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I should of ditched her after the first visit.

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I know. As assertive and bossy as I am I still like to give someone a second chance. Maybe they were having an off day. But your DD (disaster doc) sounds like she's set in her thinking and doesn't want to be confused by facts.

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Well I had no choice really because the other docs werewolf booked up and she was the only one available. I thinks she’s a newer endo to the office.

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It will be interesting to see how long she lasts there!

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I can’t believe she told if you don’t do what I say you need a different provider. How’s that for not listening. She’s young and is very arrogant and acts superior to patients.

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Seems she has a hard learning curve ahead of her!!

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My normal endo is as sweet as pie but she went out on leave.

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Hopefully she will be back soon. I would certainly tell her about your experience. She may have the ear of one of the more influential doctors in the group. She knows you and hopefully her charting will cancel out anything the bad one wrote.

My PA in my Endo office was on maternity leave. Fortunately her replacement was fine but not as easy to work with as my main one. Now she's back and I get to see her in a couple of weeks. Yeah!

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I’ll make sure to tell her everything :)

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I believe it will make a difference and you might even get some input about the situation in general. Kowledge is power!

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Still looking for that one.

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There are a few of us needing huge doses of T3 - it's down to resistance to thyroid hormone at cellular level. It's complex stuff, and endos have no clue at all about this.

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I don’t get why they don’t know that. It’s really sad they think we’re all fine and are symptoms are non thyroid related.

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It's combination of poor training and professional resistance to a now established evidence base that demonstrates their precious diagnostic and treatment paradigm is completely and utterly misguided.

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Well their evidence is lacking big time.

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I'm beginning to think the profile of RTH needs to be raised. There appears to be an increasing number of people having little success with restoring their health, and evidence suggests RTH.

Mention it and people are (understandably) reluctant to consider the possibility....it is surrounded by fear and apprehension.

One very well informed person did say to me that he thought RTH was far more prevalent than was understood. Personally I suspect those of us taking huge doses of T3 are seen by many as travelling by broomstick!

Medics have scant knowledge of this condition but it is surely not beyond their capabilities to get their heads round the issue. My GP admitted he knew nothing about the condition and the endo I spoke with simply seemed confused and said he would have to go and do some research.

I gave him a time-line showing what I'd done and said I wasn't there to ask for T3 because I buy my own supplies but, that I wanted my clinical need for T3 to recognised and recorded in my medical records. I haven't yet had his response.

I had to start from a point of complete ignorance in my quest to feel human again because nobody else had a clue what was wrong with me - and I certainly wasn't convinced that it was Fibromyalgia of CFS as had been diagnosed. One GP told me to stop asking questions and instead to follow her advice....that went well!!

I managed, with much reading along with much help and support from other members, to work out what was wrong with me and to successfully (it seems) self medicate accompanied by very careful monitoring It was basically a process of elimination.

It can be complex but I feel it is fear of both the condition and the idea of taking supraphysiological (that's me showing off!!) doses of T3 that needs first to be overcome.Only with a better knowledge and understanding (amongst medics) of what is involved might fewer people suffer years of declining health before slowly drifting into old age without knowing what is wrong with them and without appropriate treatment. I was nearly one of them!

Sorry Hillwoman I'm ranting again....I'd better go and polish my broomstick!

Take care

DD

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Rant away, DD! I'll join you for a broomstick flight protest - we'll draw banners across the sky demanding better training and treatment. :-D

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I now have the most amazing image in my head!

A legion of thyro warriors astride decorated broomsticks, protest banners flying and the skies filled with the sound of Joan Baez singing, "We shall overcome"

Oh...and lots of lucky black cats on board.

Cricky....looks like I've finally flipped, must be lack of sleep.

We can dream...

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Can I join you if I bring my own broomstick?

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We're all in this protest together!

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Since my husband is 76 he clearly has not died as a result of taking 120mcg of T3

Every single cell in your body needs T3 to function

Its a fallacy that every hypothyroid patient can convert the T4 in levothyroxine into the T3 that every cell needs ...you may have the DIO2 gene which makes it almost impossible for you to convert t4 into t3

Your endo has forgotten the most basic science

Also cannot see why Armour did not work for you ...it is a T4 T3 combo maybe you simply need to add just a little t4 to it

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I know there are a subset of patients like myself who can’t convert on t4 alone and need t3 to feel better.

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Honestly if I were you I would go to another endocrinologist. Otherwise she does have a point. She knows what she's talking about most likely but you don't want to fool around with your thyroid. If she thinks that it's dangerous then it might be. She's just looking out for you. But as I said before get another endocrinologist if you feel like she's not doing anything for you. Good luck!

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No, she’s misinformed and thinks nobody she go any higher than 10mcg of t3. I know that’s bull. There’s no cookie cutter approach to treating with t3.

I tried 10 before and couldn’t function through the day.

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As this is a ‘fill in’ endo whilst yours is out on leave - how do they explain the fact that they are undermining your usual endo and messing about with a treatment plan that has been laid out for you? Are they trying to say your original endo is cr*p? How dare they try to make you ill!

I get so sick and tired of hypothyroidism being so contentious to treat. We are at the whim of whatever lunatic ideas the doctor or endo we meet has given precedence to - and they tell us we are nuts and depressed! It’s enough to drive anyone to the brink! 🤸🏿‍♀️🥛

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I told her my other doctor prescribed 20mcg and she says maybe you should get another provider. She’s very rude and talks over me when I’m trying to make a point. I complained twice about her and asked to work with someone else and the office manager has her call me when I called to complain I still have symptoms.

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There are far too many people experiencing this poor level of care!

I'd be inclined to give up that fight and find another endo...or start reading extensively then self medicate!

I take 100mcg T3 in a single dose and I'm still here, aged 73, with no signs of OP of AF.

I am however resistant to thyroid hormone (RTH) which I only discovered several months ago, otherwise such a large dose would cause me to be vastly overmedicated. I only add this to indicate that T3, a very potent hormone, can be used safely if treated with both respect and understanding both of which this endo appears to lack...and not the fear she seems to be expressing.

You, on the other hand, may simply need a slight increase to feel well....your body will soon let you know when something is wrong.

I bet this endo has never asked you how you feel....she assumes too much and appears to have the audacity to suggest you are unable to evaluate your own health and that is only causing you further stress and anxiety.

She seems to forget the premise "First, do no harm".

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When I tell my endo I still have symptoms it’s maybe you need mental health. She thinks it’s something else and you can’t blame the thyroid for everything. She’s a young and arrogant doctor. The kind that know more than us.

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If you eat seaweed , you get natural forms of

T3 and t4, maybe you could try that

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I didn’t know that .. interesting !

Mx🌹

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I believe that seaweed has iodine in it which usually is not good for people who are Hypo.

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...... me too

Mx🌹

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That's because it is not true that seaweed gives you natural thyroid hormone. Seaweed is somewhere between a plant and a fungus and neither have thyroids.

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There are *no* thyroid hormones in seaweed - absolutely none. And in order to digest seaweed efficiently you need gut bacteria that have adapted to it according to the lecture I went to by a microbiologist. Seaweed does contain varying amounts of iodine, which can be helpful for an overactive thyroid but often harmful to people with autoimmune thyroid disease (hashis). Although iodine is one of the components of thyroid hormone, if your thyroid is incapable of making it (or you hav no thyroid) it won't help at all. You can put petrol in the tank, but if here is no engine, it won't go anywhere

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Well I rember studying about this and learning this, it may be the iodine itself in seaweed that has natural t3 and t4 properties. You are welcome to learn it for yourself

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That is a significant claim, and we do ask people to back up such things with references. Please.

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Well, I think a two hour lecture on the research of a university microbiologist who specializes in seaweeds , plus a basic understanding of thyroid function and human biology, is good enough for my learning. There are NO thyroid hormones in seaweed or any non-animal tissue.

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Nah, seaweed not for me.

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It is not a claim, it is medical fact

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No, it isn't a scientific fact. Prove it with a reference to a scientific study that shows that seaweed contains thyroid hormone. I don't think you will find one. Iodine in seaweed is a precursor of thyroid hormone (as is iodine in milk or onions, for example), but if your thyroid is faulty, taking extra iodine or tyrosine (the other main precursor) will not help unless the reason that you are not producing thyroid hormone is iodine deficiency. Natural thyroid hormone comes from the thyroid gland of an animal. That's it.

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Without getting into philosophical issues (what is a fact and all that), if it is such a well-known fact, it should be very easy for you to find a reference and post a link. Please.

Angel_of_the_North

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pharmacistanswers.com/quest...

Most doctors only use one.

That combination is T3&T4,

I started with that long ago. He was an Endocrinologist and produced his own medicine. I am not sure what’s changed.

I try to be consistent with what my first doctor told me. He made that a point.

It had been difficult to keep that original dose going. Some doctors will challenge it.

You may have to speak to another Endocrinologist...

General care physician are different.

There are some general medicine doctors that are well informed about thyroid issues.

Most general practitioners will refer you to an Endocrinologist. So that means a second opinion!

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I don’t like doctors that don’t listen to symptoms. Every person has different needs. To say one size fits all, is ridiculous in my opinion. My doctor looks at symptoms and labs. Absorption rate is different based on the individual. I would ask your doctor for where you can find more to read about their opinion on the subject so you understand them, may make them reconsider. Continuing education in this field is crucial. I’ve experienced and read that so many docs do not understand it more than just looking at the TSH and are afraid to prescribe T3. Certainly an endocrinologist would understand it, but are they changing their practice based on new research or are they old school and not changing their practice? That’s what I would want to know. Make them explain it to you to put them on the spot. This is my opinion from the research I’ve done.

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Hi Hidden. First get your FT3 measured. If you are not in the upper range of "normal" then simply take one and a half pills to get you back to the dose you were well on (15 mcg). You will run out of your pills a little sooner than the Endo expects, but I doubt that anyone is counting. By the time anyone catches on your original Endo will be back and the stupidity will be over.

BTW, this is what I did for years until I told my doc. He was drawing all sorts of conclusions from how well I was doing on 1.25 grains when all along I was on 1.5 grains - I didn't think it fair to withhold basic information. Save yourself months of pointless frustration, go back to the dose you were well on.

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When you see a user name of Hidden, it means that the person is no longer a member of this forum. :-(

We often close posts that were originated by people who have left - there is no point in wasting our time making replies. Occasionally, the thread might still be active and popular and will be left. More often, it is simply a case of none of the admins noticing!

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Oh right, I should have known that, I was thinking it was AKA anonymous.

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I do wish that HU put something more like the old ebay "not a registered user" rather than the somewhat ambiguous "Hidden".

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Good idea.

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Hi H. I just tuned back in. What happened here? Seems odd someone resigned midstream. irina

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Wondering about that too....

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Exactly so - we do get a few who sign up and get into a thread them, for whatever reason, leave.

That is why I positively try to explain about Hidden users so that more members understand what it means.

DippyDame

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Thanks. I understand. Wasn't really sure what 'Hidden' meant.

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